Has this ever happened to you, you're out somewhere public, the park, the corner store, the mall, riding the bus, and your day is abruptly disturbed by some kid pitching a public fit. You strive to carry on, the noise level increases, but the mother doesn't seem to be doing anything about it. You don't want to be annoyed, but you can't help it, this is bothering you, it's disruptive and what's more, it shouldn't be happening, in your opinion and wouldn't be if parents made the effort to exert more control over their children, as this parent obviously isn't.

Sometimes, you may have done more than think it – you've let that mother know, in no uncertain terms she isn't doing her job and her kids are going to grow up to be holy terrors if she doesn't get a grip and rein them in. Kids didn't behave like that in the good old days, oh no. And it's all the parent's fault. Or words, and judgments to that effect.

If it sounds like I'm speaking from personal experience, well, I used to be that 'lousy' mother, and I was subjected this form of censure and public humiliation on practically a daily basis. It was a long time ago, and the scars have mostly healed, but still, these aren't some of my favorite memories. However, I learned a lot from the experiences, although admittedly they weren't a lot of fun at the time.

When Shannon was a toddler, versus present day, her public behaviour and general appearance were almost completely reversed. That is to say, the amount of self-control she possessed, her ability to deal with external stimuli and changing situations, and the way she appeared to the casual observer was the total opposite of the way she is now.

And therein hangs a tale, as the cliché goes. As well as one of the most powerful and painful learning experiences of my life.

When she was small Shannon had very minimal communication skills; she didn't start speaking until she was almost four, and even then she had a vocabulary of only approximately 50 words, most of her speech was echolalic and the few words she did know she used out of context, so trying to figure out what she was actually saying/attempting to communicate was…challenging. Let's just say I became an expert at reading her body language, and non-verbal clues.

Like most autistic people she was extremely sensitive to external stimuli; she had difficult processing sensory information and found certain sounds in particular distressing. Loud noises, sirens, bells, high frequency sound, loud-speakers and PA systems like you'd find in schools and supermarkets still bother her, although thankfully she's grown more able to cope with the types of noises and sounds that used to cause her pain and distress when she was a small child.

Another thing she was – and still is extremely sensitive to – and this is the one that used to really pitch me into that rock and hard…place, frequently; my moods. My emotional state. From the time she was a baby Shannon has always reacted instantly and emphatically to any strong negative emotion I display. If I become angry or upset, well, so does she. It's not so bad now, but when she was small, keeping myself on an even emotional keel at all time was vital, no matter what was happening with Shannon, or with me, because if I lost it, whatever stress she was experiencing and displaying, the added impetus of me getting upset about her having one of her 'spells', well, the throwing gasoline on the fire analogy is not inappropriate.

Oy, you have no idea…

I figured out pretty early on if I was going to be any use to Shannon at all I had to learn how to stay calm, calm, calm. Placid, serene, nothing but happy, happy, joy, joy around her; I couldn't even cry in her presence or she'd become really upset. I had to be this way no matter what she was doing or where we were because if I didn't keep it together and stay cool, what I'd have to deal with as a result would have been fifty times worse than the original problem. And it was already pretty overwhelming.

Shannon didn't have language or a way to communicate her wants, needs and problems, nor could she process the pain and confusion of the sensory overload she was frequently subjected to. But it all had to come out somehow, and boy, did it. Shannon would frequently lose total control and pitch horrendous fits. Sometimes three, four times a day. Any time, anywhere. Think about the scene in Rain Man where Raymond loses it, and then imagine a three year old's version. Complete with throwing herself on the floor, yelling, screaming kicking. The worst little kid's hissy fit you've ever seen - a totally over the top tantrum times ten. There was no warning what would set one of these bouts off, although as time went by I got better at reading her body language and the distress signals she would telegraph, as well as figuring out what the triggers were so we could try and avoid putting her in situations that would set her off, although it wasn't always possible to entirely eliminate them.

Eventually I got pretty good at knowing when one was coming, as well as evolving coping strategies and ways of dialing down the stimulus before she reached critical mass. This wasn't, however, an overnight process, it took years of observation and trial and error and most of it happened, and had to happen when we were out in public scrutiny.

Way back when, I failed more than I succeeded. She would go off, and once she got going there was no way to stop it; any attempt anyone made to restrain or yell at her or calm her down just made it worse. All I could do was to stay calm, focus on Shannon, speak softly to her and try and 'talk her down'. I couldn't even touch her when she got like this. She would yell and kick and scream until she was done, and then it was as if it had never happened. She would calmly, quietly get up, and we'd be on our way again.

This is where the fun starts. I had this adorable child-grenade on my hands, and like it or not I had no choice but to take her out into the world when I did stuff like, oh, shopping for groceries. I was on my own; there was no one else to do any of this stuff for me, or for me to leave her with while I did it, so I would bundle her up, grit my teeth, and sally bravely forth with my miniature, constantly ticking time bomb never knowing when she was going to go off.

It was never a question of if. It was always a given it was going to happen; I just didn't know where or when. But that wasn't what bothered me about the whole thing. Shannon's episodes I could deal with. They weren't her fault, she couldn't help herself. I hurt when she hurt, yes, it grieved me to see her in so much pain the rage and frustration had only one outlet, and I would have done anything to have spared her that, but if throwing those fits was the only way she could work it out, I didn't blame her. No, Shannon wasn't the problem, what was…

Quite another thing entirely.

What I desperately hoped and prayed for when I got up each morning wanting that day to be the one when I wouldn't have to face what I knew was waiting out there for me and my precious baby girl, that was a whole 'nother world of woe.

And on that note I'll leave you for this evening, concluding this (I hope) in part 3.

Blessings

Phoenix